4mm invasive TNBC

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northstarnc
northstarnc Member Posts: 5

Hi everyone, new here and in a bind. Scared and confused. I am BRCA1 so was doing my final MRI and mammo before I started my preventative surgeries. (40 year old woth strong famiy history of both ovararian and breast cancer) MRI showed a possible lesion, had biopsy and it was found to be DCIS. April, completed my hysterectomy and May had mastectomy. During mastectomy they found a 4mm invasive TN tumor on top of the 1.2cm DCIS I already knew about. NO lymph node involvement and clean margins. Onco says NO chemo. She then took my case before board of doctors and all but one doc agreed with her. They said because of the size chemo isnt necessary but if it were over 5mm it would be. Then thet leave it up to ME to decide!!! I cant wrap my head around the fact the 1mm means chemo or no chemo!! Anyone have this or similar situation? Please help....

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  • Desirr77
    Desirr77 Member Posts: 31
    edited June 2017

    Dear northstarnc,

    there is an article on just your case written by Eric P. Winer of Dana Farber, a world wide known expert on triple negative breast cancer, maybe it helps you to decide:"Stage trumps biology for most small triple negative breast cancers."
    All the best, Desiree


  • chi-girl
    chi-girl Member Posts: 21
    edited June 2017

    Yes. but I was 1mm on the other side (6mm) and I had chemo. My Onc and BS both said if I was under 5mm then I wouldn't have had to have chemo. I don't know if the standard of care is different for BRCA+. And actually they both said that chemo is "considered" from 6mm to 1cm, I believe. So they thought it could go either way, but they said it was probably a good idea to do chemo.

    And I was like you...I couldn't believe that a tiny bit, like 1mm, would make a difference between chemo or not.

    If you're uncomfortable, you could always get a 2nd opinion to put your mind at ease.

  • Desirr77
    Desirr77 Member Posts: 31
    edited June 2017

    Dear chi-girl,

    was your tumour 6mm before or after biopsy? Mine was 6mm after biopsy, 1cm before. My onc told me into chemo. i felt I had no choice.

  • chi-girl
    chi-girl Member Posts: 21
    edited June 2017

    I'm not sure?? That's what my pathology report said, post surgery. I had chemo post surgery. I don't know that I had a size estimate with my biopsy--I don't think I ever saw a report from the biopsy. I had a stereotactic biopsy (I think that's what it was called) if that makes a difference?? This was 5 years ago, so a lot could have changed between then and now.

    The doctors did recommend chemo, but said that standard of care was that it was "considered" over 5mm. They said they were recommending it because of my age and to reduce the risk of reoccurence.

    They did think for awhile that I might be Stage 0 because it looked to be inflammed around the tumor (my notes) and they thought it may not have spread, but they requested a slide from my original hospital and I was Stage 1. I don't know if any of that factored into their decision.

    I recorded some statistics (I always took notes) and it looks like the benefit of the chemo was primarily in reducing the risk of it coming back.

    I felt like I had little choice, but I think that came from me and not from the doctors. They did ask if I wanted chemo. (Like who wants chemo, right?) Although in retrospect, if I had decided against it, they would have probably tried to sway me towards chemo.

    To the Original Poster: you could ask them to run the statistics for you as well--they may be helpful in making your decision. My doctors used a site called Adjuvent? Online.


  • Desirr77
    Desirr77 Member Posts: 31
    edited June 2017

    Dear chi-girl,

    it is so comforting to hear that you are 5 years out with the same diagnosis!! After surgery my path report said 6mm (but I know that it was 10mm before biopsy because my gyn misdiagnosed a fibroadenoma and took the size) and I had chemo post surgery too. My tumour had a huge amount of white blood cells in it (medullary like) maybe that is meant with "inflammed" in your notes? These tumours respond very well to chemo and rarely spread to the lymph nodes.

    Wish you all the best, greetings from Germany

    Desiree


  • chi-girl
    chi-girl Member Posts: 21
    edited June 2017

    Hello from Chicago!

    You'll be at 5 years before you know it too!

    I never asked her what that meant and I usually ask her everything. At the time, I was just so excited about the possibiity of being Stage 0 that I didn't listen to much else.

  • northstarnc
    northstarnc Member Posts: 5
    edited June 2017

    hi everyone! Chi-girl, how did you do with the chemo? Im scheduled to start Monday. Ill receiving the same delicious cocktail you had;) I have to admit Im petrified and am desperate for more information. I did check the stats calculators and numbers with or without chemo are good. I am doing the chemo I think because Im MORE afraid of it coming back...ugh...Did you feel that way?

  • chi-girl
    chi-girl Member Posts: 21
    edited June 2017

    Hi northstarnc,

    I did okay and was pretty scared for my first round like you are. I followed all the tips and tricks mentioned in the chemo thread--if you want specifics of what I did, let me know--I'd be happy to share. I didn't vomit at all, which was one of my biggest fears. One of the best bits of advice I was given was to let the doctor know my symptoms so that they could be fixed. I was woozy and couldn't sleep well during the first few days after my first round. I let the doctor know and he gave me something to help with those symptoms for the next rounds.

    I did chemo for the same reason. I didn't want the cancer to come back. And I figured I was young and could handle it.

    Good luck on Monday! You'll do fine!

  • eunicetseng
    eunicetseng Member Posts: 3
    edited June 2017

    Hi, I hope I don't interrupt the flow of the discussion, but my mind is no longer at peace once I saw the study result of Eric P. Winer. My mom was dx with tnbc 3mm IDC, grade 2, ki67:8%, had mastectomy in March. Many oncologists we've consulted didn't recommend chemo, and the decision is also left to us. We finally decided not to do chemo due to good prognosis for T1a and my mother's unwillingness, she is 60 years old and afraid of the strong side effects. The info I saw before generally state that there is no significant difference in survival for T1a TNBC with or without chemo, but at this moment I've searched out some say chemo does make important difference, why the results are at odds?? I live in Taiwan and info about TNBC is not so precise. Northstarnc, you've mentioned that the numbers with or without chemo are good, would you mind posting the link? Any source of info or thought would be appreciated! I know it may be too late for my mom to have chemo now but at this moment I feel like urged to talk her into chemo......It may sounds unwise to struggle with decision you've made but there is only mom and me, it's hard to face all by myself alone......

    Eunice

  • Desirr77
    Desirr77 Member Posts: 31
    edited June 2017

    Dear Eunice,

    maybe you want to look at tools like cancermath where you can see the benefits of chemo for a tumour with the size of your mother´s. You will see that chemo for such a tiny tumour brings no more benefit than maybe 2%. Is that worth all side effects? You will never get up to a 100% guarantee once you have had cancer but I am sure that declining chemo is the right decision. Her KI67 is pretty low so chemo will not work that good for her.

    Best wishes,

    Desiree

  • eunicetseng
    eunicetseng Member Posts: 3
    edited June 2017

    Dear Desiree,

    Thank you for the replying, that made me more sure of the decision we've made! I might care too much the 100% marked in the study, as what you said, there is no 100% guarantee when it comes to cancer. And thank you for letting me know the relation between chemo and Ki 67.

    All the best,

    Eunice

  • cmandtp
    cmandtp Member Posts: 2
    edited August 2018

    chi-girl,

    do you remember if your path report said lymphovascular invasion? my identical twin was just diagnosed with TNBC. 7mm tumor. She had lumpectomy-no lymph node involvement and margins clear. the report also showed slight lymphovascular invasion.

    they are recommending chemo but gave her a choice of CMF, TC or ACT. Like you, she cant seem to reconcile the side effects for 2mm!

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